My life with cancer

Feeling better today.  I was able to do some work around the house today with John.  Still not much energy though.  Lots of sloughing of gum tissue; I even brushed my gums from the outside just to clean it up.  Not too painful on the outside, but I didn’t try to brush on the inside.  I can’t really get my mouth open that much to be able to do that.  Got very tired at the end of the day.  Waiting for my weekend reprieve.

Felt horrible all day today.  Spent all day in bed floating in and out of sleep.  Dragged myself out of bed just to get to radiation.  If it hadn’t been for John, I wouldn’t have drank or eaten anything.  Thankfully, he was there so I was well taken care of in that department.  Hoping for a better tomorrow.

Morning went well.  Feeling about everything unchanged, but of course after radiation my mouth is feeling much worse this evening.  Just freshly burned.  Ouch!  Doing some coughing this evening too because had a little vomiting episode after drinking a little too much cherry limeade.  I’ll be staying away from those till I’m better.  Neck is getting redder and drier.  Dr. Greenberg is giving me some cream for that, so I’ll be getting that tomorrow.

My sister left to go home today, so I was pretty emotional about that.  Just sad to see her go, but she’s gotta go back to her family.  I’ll be visiting her as soon as I can and all our schedules align.

Woke up feeling quite good this morning.  Pain mildly controlled, but still there.  Had a great night’s sleep.  Woke up often, but not too often, maybe once every 1-2 hours.  Eating is going awesome with John’s help.   No nausea at all.  I have a tremendous amount of saliva production, but it’s not as thick as before and that’s rather easier to spit out.  My mouth is a complete mess.  I can’t brush my teeth anymore.  Since I wasn’t able to take care of it with my rinses while I was in the hospital, it’s just one big sore and I have cold sores on my lips.  The Biotene rinse now feels like heaven, so that’s my “go to” rinse.  I was able to drink some Sprite today, so definitely improving.

Radiation got cancelled because the machine is broken today, so now my last radiation is tentatively Wednesday of next week.  Went in for chemo.  Dr. Trillo is a bit concerned about my mouth, so he gave me an antiviral for the herpes sores, and an antifungal for my mouth as well.  Maybe if the sores heal a little I’ll feel better.  He wasn’t much concerned about the rest of the stuff and actually said it was a good thing I got a blood transfusion.  Who would have thunk it?  Chemo went great.  Tamara drew blood from my port and for once it went super smoothly.  It’s like the Powers-that-be knew that today, I was going to have a hard time tolerating a vein stick.  The rest was cake as usual and everyone was quite happy to see me on my feet. 🙂

Woke up this morning to a brand new song with the title “You need a blood transfusion.”  If you had asked me what I expected to hear this morning, I can tell you that was definitely not it.  Apparently, I came in with a hemoglobin of 12 something, then yesterday it dropped to 9 something, and this morning it’s 7.1.  So now I’m mildly anemic.  I okayed the blood transfusion since it didn’t sound like that was going to keep me from going home today.  So now of course they have to draw blood again to type me.  I have been stuck so many times that I just really am getting sick of it now.  Anyway, I got 2 units of blood and fortunately that worked out fine.  The cardiologist came in, said that everything looks okay except that those enzymes had been high and he wants me to get a chemical stress test soon, since I’m not able to do a physical one right now.  Running on a treadmill sounds like such a blast, but then getting stuck with yet another needle wound be so much fun too.  He tells me to call his office tomorrow morning to set up the stress test, but says that I don’t need to stay at the hospital another day.  Yes!  He thinks that the low hemoglobin was probably just hemodilution from the fluids.  The internist comes in and pretty much repeats everything that the cardiologist said.  So after I get my blood, I actually get discharged.  They remove the many tubes and bandages have me sign the papers and I’m on my way.  Funny thing is, my day nurse Brenda, is the most helpful with telling me what my results actually are.  She pretty much points out that they’re all just treating the numbers, and nothing else.  She also says that those cardiac enzymes are going down and sort of insinuates that I don’t really need a cardiac work up.  I’ve pretty much already decided that I’m going to have those values rechecked with my PCP once I’m feeling better and then if it looks suspicious, I’ll get a stress test.

Coming home is wonderful.  I can wear my clothes and not sweat like a pig ’cause I’m not sitting on plastic.  A shower makes me feel that much more human.  I’m looking forward to a radiation session and a chemo session to get finished with this crazy show.  I did apply a 75 mcg/hr fentanyl patch.  I’m gonna see if I can suck it up with just that for 6 days.  And then add 25 mcg next weekend. Hopefully that’ll last me untill I start healing.  Once that happens – 2 weeks after I’m done with treatment? -I’ll be able to start decreasing the patches.

Happy, happy, happy to be home!  😀

So I get stuck at the hospital all day again.  Dr. Trillo came in this morning and said that things look fine, so if I’m doing okay on Monday, then I can just do my chemo then.  I’ve already had my CBC and chest x-ray in the morning, when the internist comes in.  She says that some of my cardiac enzymes were elevated, so they want me to be evaluated by a cardiologist. I get a echocardiogram and EKG, then the cardiologist comes in and says that all the tests look fine, but those enzymes are high and he’s still concerned.  He wants to monitor me one more night.  So now they start drawing blood every 4 hours, and mind you I only have one hand available for that, and I get to stay till Sunday.  They won’t let me go home.  I’ll have to put my foot down tomorrow.  He had mentioned something about doing a stress test, but I wonder if he realizes that now is not a time that I can even do one.

I’m severely painful in my mouth.  Often spitting leads to gagging.  I’m trying to avoid talking completely.  No one at the hospital is really getting it, but I guess that’s not their fault.  I can’t get anything but morphine IV which is really just barely cutting the mustard now that the fentanyl has worn off.  I can’t wait to go home, so I can use some of the pain relief things that I have there.  Dr. Trillo said that I could still use the fentanyl patch just not at as high a dose.  I think I may try 75 when I get home and see if I can suffer through a week on that.  I’m scared, but with this amount of pain I need to do something for myself.

My day from my family’s perspective:

My husband tries to wake me up at the usual time, so that I move from the couch to the bed.  He can’t wake me up, but doesn’t think too much of it since he saw I blogged at 3 am yesterday, so I’m pretty tired.  I continue sleeping on the couch while he goes to work and then my sister gets the other 2 kiddos off to school and daycare.  When she comes back, I have apparently put on my glasses, so she thinks I had woken up sometime while she was gone.  Finally she tries to wake me up, around 10:30 or so.  She can’t.  I’m completely unresponsive.  She tries pinching, Marlo’s screaming, etc. and nothing works.  She calls John and the doctors, and someone eventually tells her to call 911.  The paramedics come and start working on me.  I sort of wake up and puke up a bunch of mucus.  Then they haul me off to McKinney Medical Center.  She can’t go on the ambulance because of the baby, so she follows me in the car while John is coming from Denton.

My day from my perspective:

I’m having a dream where I’m in a futuristic starship battle and there’s a lot of confusion which side is the right/good side.  I’ve had this dream before.  I’m having a lot of difficulty breathing, but I’m managing.  Then we’ve lost the battle and I’m being taken to a medical facility because the baby I’m carrying is coming now (hey, don’t ask me, it’s just a crazy dream).  They take my baby and the men and one lady are telling me to calm down.  I’m still having difficulty breathing, everything is blurry, and I’m very scared.  They’re still telling me to calm down, they ask me who Marcus is;  I figure because they saw my tattoo.  I’m not telling them anything about the rest of my kids, they did just take my baby after all.  They place a urinary catheter; this is most annoying; and then they leave me alone.  Then I see some people shapes come into the room (let’s not forget that I’m still practically blind), and they look familiar, my parents, sister, and husband.  And then things start clearing up when I start getting all the stories and they put my glasses on, so that I can see.

I had increased my fentanyl from 125 to 150 mcg/hr last night and that’s what possibly caused a reaction.  I came into the hospital with severe tachycardia, heart rate over about 160.  My blood pressure also fell quite a bit.  I woke up with 2 IV lines, a nasal cannula, and a urinary cath.  Of course they’ll be keeping me overnight to make sure I do okay.  I should be able to go home tomorrow.  On the spot, we decide that John will stay home with me during this next week, and my mom possibly the week after.  Not really wanting to do the solo thing at home if I’m that close to comatose.

Lots of visitors in the afternoon and evening.  Feeling very loved and scared, of course.  Seven more radiation and two more chemotherapy sessions; let’s get this over with!

Woke up this morning with diarrhea in my underwear.  Peachy.  So I had to start off with shower and laundry.  Now I really need to concentrate on trying to get it under control.  Since I didn’t drink anything bright and early, I did vomit up the little bit of 7Up that I started the morning off with.  Peachy, again.  Shortly thereafter, took the Zofran and got a can of food in me.  Then 3 more times during the day.  Throat was getting worse and worse throughout the day, so I’ve added another 25 mcg/hr fentanyl to my pain relief.  By the middle of the night, I’m starting to feel much better.  Since I was feeling like shit early evening, I slept quite a bit, so of course now I can’t sleep at night.  I’ll be snoozing during chemo.  Peachy, again.  🙂  I’m never gonna get all this reading done.

Feeling much better today now that I’ve got the pain controlled.  John was out of town today; went to Austin for a committee meeting for the day.  My sister said she didn’t need any help, so I stayed out of her way.  Went to Kohl’s this morning with my sister to get some presents for the kiddos, use the 30% off coupon that I just got, and replenish the pajama supply for the boys.  I was able to handle shopping quite well.  Didn’t really get overly tired or anything like that.

Terri came over in the afternoon to clean.  I stayed out of her way because of course I was tired after all that ado in the morning.   Did well for the rest of the day.  Only able to get 3 cans of food in me per day.  With nausea and diarrhea, I really don’t have the time to get any more in.

I helped get the kids ready for bed some.  They seemed to appreciate it, although my body didn’t.  Just got me more tired.  Glad that my parents will be taking them for Spring Break next week.  It’ll make life much easier.

My throat is starting to get pretty sore again, so instead of waiting till tomorrow morning for the tell-tale burning feeling, I just slapped on another 25 patch.  Not in the mood to feel the pain again.  So I’m up to 125 mcg/hr fentanyl transdermally.  Dr. Greenberg said today that I can easily go up to 200 if need be.  Good news to me!

Tube feeding is going okay.  I did vomit after my second feeding today (so only 3 feedings total when I finally got the courage up to do the last feeding).  That’s happened before, but not as bad as today.  I took a Zofran before, but at the same time and not a few minutes beforehand.  Took if 30 minutes earlier for the 3rd feeding.  Good thing I have the ODTs (orally disintegrating tablets) and can drink 7up to help them go down.  So my belly is a sight with 3 patched and the tube.

My neck is starting to get a bit red too as you can see in the picture.  Still no open wounds, but still have 2 weeks to go, so we shall see if there’ll be any damage.

Finally sleeping better.  I sleep, wake up, spit up, and go back to sleep.  I might be doing that every 30-60 minutes, but I’m not getting up to flush out and clean my mouth which is making for mostly sleeping.  My body is enjoying it.

Dinner today from Kara Lane, poppy seed chicken, was apparently quite tasty.  Wonderful woman!  She also took Hektor after school today for Derek to play with again.  I’m hoping that’ll continue beyond my illness.  She’s such a lovely person and Hektor likes playing with Derek.  I’m hoping many of these relationships extend beyond my treatment and medical problems.  I’m meeting some awesome people around me.