My life with cancer

The PEG tube is in and doing its thing.  Should’ve gotten it in a week earlier than I did, but you just never know.  I could play much more of a martyr this way, I guess.  Not my favorite role, but if that’s all I got then why not. 😉  You can see the plethora (oh, ok, just 3) band-aids holding on to the fentanyl patches on my torso.

A pretty “normal” day today.  Mouth pain appears to be controlled.  Somehow, fatigue is controlled, although I’m on the verge of falling asleep any minute of the day.  Morning was good and productive.  My sister and I actually went to get 2 new tires for my car.  I drank a bottle of cold water at the tire place and it went down quite smoothly.

During radiation I’m continuing to get very, very sweaty on my face.  I even remembered to bring short sleeves today and it didn’t help much.  Still falling asleep on the radiation table.  Skin on neck is red but not too bad yet.

Went inside Market Street with sis today for a quick shopping trip after radiation.  Oh boy!  I got awfully tired after that one, so of course started getting cold chills and sweats.  It continued through the evening.

I’m hoping that I’ll get some sleep tonight, since last night was a wash as usual.

Feeling much better today.  Able to get around and do all kinds of little chores.  Makes me feel better about the house, which is always a plus.  Weight is holding steady at ~178 lbs.  I did feel a bit nauseous today, but 2 days after chemo is pretty much the norm.  Even had the energy to make pancakes for everyone for breakfast.  Since I was feeling a tad nauseous, I only “drank” 3 cans of food today.

Having serious difficulty sleeping.  Not really able to get decent amount of sleep in a row.  Ten to fifteen minutes here and there.  It’s pretty bad.  I have this whole awake at night, mouth flushing, iPad playing thing going on.  Need to come up with a solution or I’m not going to get any sleep.  Hoping for a little bit of a better night’s sleep tonight.

Overall feeling incredibly better.  The eating is helping a lot.  I’m not really able to take in more than 4 cans per day, but with the calories from the 7up I’m drinking, I’m still taking in a little over 1500 calories per day.  This is much better than I’ve done in quite a while and I want to continue to lose a little bit of weight, so it’s a perfect way to do it.  Everything, but the 7up and some club soda is going in the tube.  I don’t even want to think about anything else passing through my throat.  I did feel somewhat nauseous today, so I have taken the Zofran during the day and a Phenegran this evening.  They seem to be controlling the nausea.  I am pouring Miralax down the tube twice daily and I had success today.  First BM in a little over a week.  Yay!  Very gassy probably because of the tube placement procedure, I hope.  There was this medicine odor to the gas which was really strange and why I’m thinking it was due to the tube placement.  I better get regular here pretty soon.  I’m sick of managing all these problems!

My throat feels horrible! 🙁 There’s this incredible burning feeling at the back of my mouth as I swallow anything.  I also felt a couple of new little blisters under my tongue in the front of my mouth.  They don’t feel like anything, so I guess that’s the positive.  The only thing that I can handle PO are heavily carbonated drinks.  Today that was one 8 oz 7up and one 6 oz club soda.  Not much.  It also hurts to get the little spit/phlegm that I make to go down that way.  It’s beginning to gag me and actually caused me to vomit a small portion of one of my “meals.”  I added a 25 mcg/hr fentanyl patch this afternoon because of that.  I’m up to 100 mcg/hr and I hope it helps.  I’m gonna have to ask my doctor on Tuesday how high I can go on these patches.  Granted I only have 2 weeks and 1 day left, but at the rate I’m going, I’ll be going up at least 2 more times.

Fifth chemo session today and I must say that since I spend almost 4 consecutive hours per week with Margaret and Tamara, the wonderful nurses, I absolutely love them.  Most compassionate lovely ladies there are.  Not that the radiation people aren’t great too.  Their job is just a lot more expedient.  On the cost side, of course it’s looking like the chemo is costing $40 per visit since it’s with an office visit, unlike the radiation which is a whole lot more.  Not surprising, but it certainly can’t help but weigh my positive feelings toward the chemo staff.  Everyone said today that I looked much better than I had on Monday.  Again, not surprising since I feel significantly better as well.

Went this morning to have Dr. Anderson evaluate his lovely work on the PEG tube.  He had to twist it of course; ouch!  He did say that it looks great and just keep on doing what I’m doing.  I have been putting a can of formula down the tube per feeding which is working out fine.  It does make me feel a little funny right afterwards, so I sit and I rest.  I’m thinking I’ll be able to get about 5 cans per day down that thing.  I’ll be continuing the Zofran too, since it does do as excellent job of making me a little nauseous which I’d like to keep down to a minimum.  The amoxicillin and going in the tube great too, so it’s liquid meds until I can swallow pills easily again.

Two more weeks of chemo and eleven more sessions of radiation to go.  *sigh*  Can’t wait till the end…

Woke up feeling much better this morning than yesterday evening.  Went through the usual morning motions and then attempted to feed myself 2 ozof Ensure via the PEG tube.  Got a little dizzy, painful, nauseous, etc.  Had to lay down for about an hour.  So a bit of a frightening start.  But I pushed on.  Started adding the Zofran to my regimen, and that seems to have helped.  Felt much better as the day progressed.  Even did laundry; well not the folding, but the other stuff.

The nutritionist came in the early evening and dropped off the formula.  100% covered by insurance, so by golly, that’s what I’m getting.  I’m supposed to take in 7 cans per day (2485 calories).  I don’t think so!  I may do 5.  I am still trying to lose a little bit more weight.  She did suggest running the formula in via gravity, so I did 2 cans like that tonight and it went down much smoother that way.  I’m liking this tube…

Continuing to feel a little bit better each morning, or I’m just telling myself that.  Very possibly the latter.  Had my radiation this morning, so that I could go in at noon to have that feeding tube placed.

Got to go to Baylor Plano this time, beautiful new facility.  Got in a private pre-op/post-op room with a semi-private bathroom, fancy shmancy.  Told the nurses that my mediport was accessed and ready for use, so no IVC for me.  Yay!  (Even have a picture of it :).)  They did mention that the anesthesiologist wouldn’t use the port if he was to use propofol because it sticks to the port???  The anesthesiologist said that was a load of doo doo, just in a much nicer way.  Had a Dr. Paul Anderson doing the procedure in the GI lab.  I felt very canine. 😉 The anesthesiologist was ever so kind and used my already accessed mediport – did I mention that I love my mediport? 🙂 They put a tooth guard in my mouth and that was almost unbearable. 😥 The anesthesiologist was so kind and kept encouraging me to hang in there with these lovely words, “And the propofol is going in right now,” quite swiftly.  He was lovely (short, young Indian man, but he said all the right things :).  Woke up quite sore in the abdominal area, but very aware of my surroundings.

Instructions for the tube are just about what I expected.  I have to wait till tomorrow to use it.

Stayed in the hospital until my liter of fluids ran in and then set out on our way home.  Very sore in the belly.  Got home, had John put a fentanyl patch (75 mcg/hr) on me, and promptly crashed out.  John had to clean the iodine scrub off my belly before we went to bed, but that was about it for the day for me.

Woke up feeling quite horrible this morning.  I just knew I was sick.  Went in to see Dr. Trillo.  Fever of 100.1, but that’s it.  Got a liter of fluids and IV antibiotic.  Felt much better after that.  Of course now we’re getting the PEG tube placed ASAP.  Have to go back tomorrow morning for some more fluids and antibiotics.  PEG tube placement is scheduled for Wednesday, the day after tomorrow.  Got to miss radiation today because of these developments, so it’s getting tacked on to the end of my treatments.  Yippee.

Did find something to drink that doesn’t hurt my throat, carbonated beverages, especially ones that aren’t too sweet – no thank you, Coke.  So now I have something that I can drink that doesn’t hurt.  Have to be cold which us just fine with me.

My sister is coming tomorrow to help out for a bit.  I’m really looking forward to that, just having someone here who can help out that I don’t have to tiptoe around.  *sigh*

That’s been my day: yuck!  I’ve been quite painful in my throat and just not wanting to do anything.  I tried to take my amoxicillin when I remembered this afternoon and then I promptly vomited it up.  So much for that.  I’m able to take my Zofran, but I’m afraid to take anything else.  This is the first day that I haven’t taken a shower either.  I did put on three 25 mcg/hr fentanyl patches on, so I’ll see how I feel tomorrow.  I’m thinking it’s time for the G-tube.  I think I’ll be calling tomorrow morning to schedule that.  I still haven’t eaten anything today, just drank some water.  I may think about some juice.  I just don’t think I have it in me to take down Ensure today.

Opera was good last night, but I had to do a lot of spitting which is quite unladylike, and I’d get serious cold chills after every time I would move around some (like to go to the  bathroom to spit :-/).  I was tired last night, but able to get my act together enough to get home and put myself to bed.

It’s getting harder.  I wanna cry but it hurts so bad to do so that I have to control myself.  Life sucks right about now.

Today’s been okay.  I took Hektor to his Eucharist prep class this morning at church.  Took about 2 hours, but tired me out.  After coming home, spent the rest of the day in bed reading and sleeping to prep for the opera tonight.  I don’t think it’s a good idea for me to go, but of course I’m gonna ignore that feeling and go.  My throat is starting to hurt again already and I’m thinking I’ll be slapping on a additional patch tomorrow when I replace the other 2.  We’ll see.  Didn’t get to “eat” a yogurt and one Ensure today.  Just didn’t have time.