Enjoying some time off

Haven’t written in forever because I got very discouraged at the SLOW process of healing.  I didn’t really think I was making that much progress to make it worth writing every day.  Maybe I should have cut down to once a week and not once a month. 🙂

Well, I think I’ve made quite a bit of progress since the last time I posted.  I can talk, well, and for quite a while.  That’s made things easier in the communication process, especially back home and for the next few days – more about that later.  I haven’t really made any progress in eating.  I tried some foods, mostly soft, about 3 weeks ago.  Everything hurt going down, some things worse than others.  Some things tasted very good, some had little flavor at all.  I am drinking a lot more.  I’m back to sipping my Sprites/7Ups. The fizzes clear my throat.  Cool to room temperature water is really good as well, and goes down very nice and easy.  I’m really not eating anything at this time, but I did have a medical setback in the last couple of weeks.
Soooo, we had Hektor’s First Communion 2 weeks ago and everything was hunky-dory.  And then I got really sick.  Felt funny on Monday afterwards; was a little off on Teusday; then the shit hit the fan – excuse the language – on Wednesday.  I was really, really tired and could barely get out of bed.  I figured I’d give it a day.  On Thursday, I wanted to kill myself (figuratively) I felt so bad.  John came home to take me to the doctor.  Of course on exam and bloodwork I didn’t look so bad.  They could definitely tell by my demeanor that I felt like crap.  They took blood for cultures from my port and peripherally.  I got IV fluids and Rocephin and they sent me home.  I didn’t really feel all that much better, but what’ya gonna do?  Friday, I felt much better.  Ahhh…  I went back for more of the same in the afternoon and was prescribed Augmentin to start on Saturday.  I got my meds and started those, but by Saturday afternoon I was starting to feel a little off again.  On Sunday, Mother’s Day, I felt horrible again.  Not quite as bad as Thursday, but close.  I had to go to the emergency room while my mom watched her grandsons on Mother’s Day.  Nice present?  Bonding with your grandkids?  John took me to the hospital and they repeated the bloodwork and blood cultures, and they took chest X-rays.  Didn’t find anything all that wrong with me, so they wouldn’t admit me to the hospital, and boy, I was ready to stay.  I got 2 liters of IV fluids and IV Leviquin and they sent me home.  I actually did feel a bit better this time around.  I felt quite a bit better on Monday, so Dr. Trillo started me on oral Leviquin and a “let’s see how things go.”  I felt much better the next day and even better by Wednesday afternoon.  On Wednesday my blood cultures came back negative, so I’m chalking this whole thing up to a severe upper respiratory I got from Marcus.  Definitely back to feeling “normal” today.
Of course, since my blood cultures came back negative, I decided to join my friends on the vacation we’ve been planning for, oh, a year, our annual girls’ cruise.  I guess maybe when Amanda turns 30, it’ll be the annual women’s cruise.  Ha, ha!  Either way I’m getting to try to eat different foods without having to cook them.  For lunch yesterday, I had half a yogurt, a few spoonfuls of cottage cheese, a cup of milk, and a bite of bread and fish.  The chunky of the bread and fish were still too much for my throat.  For dinner, I tried gazpacho and mashed potatoes with sour cream and butter.  The gazpacho tasted fantastic, but it’s too acidic for me to be able to eat any decent amount of it to count.  The mashed potatoes were lumpy and tasteless, so I really didn’t get enough dinner and had to tube a can of my Jevity HR in to get some calories.  I am drinking a load and a half of water, so that’s good.  For breakfast this morning, I had some grits with strawberry jelly; they felt really weird in my teeth.  Also had a half a yogurt and a large cup of milk, so I did quite well.  I actually stopped eating because I felt tired and a bit full, which is kinda funny considering the minuscule amount of food I ate.  I’m trying to find a good juice, so that I can get some calories in my drink too.  This morning I have pineapple juice.  It’s actually not bad going down, especially with a water chaser, and it tastes yummy.  I’m actually finishing typing this lounging on the deck with my buds enjoying the sunshine.  Today, life is good. 😀

Same old, same old

Haven’t posted in a week because there’s really no reason.  Things just don’t change.  I’m still making lots of thick saliva that I can’t swallow.  It’s getting a little less thick, but not manageable yet.  I have to take a spit cup with me everywhere I go.  And the halitosis?  It’s horrendous.  Trying to rinse with minty Biotène, but that’s just another thing to remember that I inevitably forget to do.  I’m still anemic.  Really no change in that.  Doc told me to start exercising and hopefully that will help.  I’m walking the dog once a day, briskly.  I’m going to try to go up to twice, but that’s gonna take some time and dedication.  My vitamin D levels are down, so doc told me to take 1000 IU daily.  Wednesday and Thursday that worked fine, but after that the capsule gets stuck in my throat and I inevitably throw it up.  Today I tried to open one and squeeze the contents out, but it’s fairly small, so I’m not sure how successful I was.  I’ll try to swallow it again tomorrow.  I still have thrush on my tongue, after weeks of oral fluconazole.  Doc told me to stop oral antibiotic and really concentrate on doing the oral Clotrimazole.  It’s a tablet that’s supposed to dissolve on your tongue.  Now of course since I don’t have normal spit that doesn’t happen, so what I do is dissolve the pill in a small amount of water, then take that in my mouth and keep it in there for 5-15 minutes.  It’s the best I can do.  I’m also continuing the oral fluconazole which of course the pharmacy ran out of and I’m not getting it till Monday, I hope.  I should probably mention to the doc next visit my altered clotrimazole regimen and make sure that’s okay and there isn’t anything better or better suited that we could use.  My tongue and throat still hurt.  The rest of my mouth feels mostly okay.  It’s sore, but not necessarily painful.

I guess the only change is that I started drinking some.  I try to take a sip of water pretty regularly to keep my throat moist.  I’ve also drank juices, club soda, and 7Up.  The fizzy drinks are maybe hurt a little going down, but I don’t know if it’s the fizz or the cold.  Cold water is a bit much, so I’m  sticking to tap cold or room temp.  Not even trying food, since I can’t even get a capsule to glide down my throat.  I figure there’s no point until I can truly eat a mostly balanced diet, even if it is made up of potatoes with butter and cheese, pudding, and tomato soup.  So I’m still LOVING my PEG tube.  Did I mention that I love my PEG tube?  The thing is a life saver, and now weeks into use, I don’t feel it at all.  I go outside in fitted shirts and a funny tube distention at the bottom of my stomach without a second thought.  I’m proud of the damn thing!

The second change is that I went down on the strength of my patch.  With the 75 mcg fentanyl I needed a new patch every 2-2.5 days, and now on the 50 mcg it’s closer to 2, and I’ve only had one patch.  So I have a good day, then a so-so day, and then a shitty day.  That’s today, the shitty day.  I’m extremely fatigued, I’m overproducing saliva, and I’m weak like I was so anemic that I need a blood transfusion.  I hate days like this.  Today, I didn’t even bother getting out of bed, which I hate.  I want to be able to spend time with my family and friends, and this healing is not happening fast enough.  And I feel like it’s my fault that my oldest is acting up.  He’s gotten in trouble at school a couple of times, and he’s full of attitude at home all the time now.  And what’s really frustrating is that I can’t even talk to him because I can’t talk!  Last night I tried to read a book, and on the 7th word I gagged and had to keep myself from throwing up.  Very, very frustrating.  So with the patches, I don’t know if I should wean fast and get off the damn drug or just use them every 2 days till I’m eating.  It’s a huge dilemma, but I can say that I don’t want to hurt and I certainly hate the fatigue/weak state that lack of lots of fentanyl puts me in.  If I stop, is it gonna be 3 days of feeling crappy or 14?  If I knew that, I’d probably be more likely to make a decision, but nothing is written in stone and everyone is different.  Apparently I’m not a fast healer.  Bummer…

Did awesome today

Woken up by child at 7 am.  Not bad.  Felt weak in the morning, but once I got some food in me, I was feeling much better.  Actually had quite a bit of energy throughout the day, which was good since I had to take care of the kids all by myself.  I will say that they watched quite a bit of TV.  Although, they did not spend the whole day in front of it.  Drank some 7Up straight and that actually feels better than with the juice.  Maybe the juice is just too acidic for the sores in my mouth and throat.  Throat not on fire today at all, as I expected.  I was almost hitting the hay in mid-afternoon, but I fought it and had lots of energy for the late afternoon/early evening dinner cooking.  So overall a good day.  If tomorrow is half as successful, I’ll be in hog heaven.

Okay day

I’m all alone taking care of the kids.  So waking up at 5:30, so I can eat before waking them up and then rest for 30 minutes, so I don’t puke.  Tired in the morning, but I got them to school and then took an hour nap.  Finally got into the shower and put on a new patch afterwards because I just wasn’t feeling myself.  Drank some juice/7Up and it really hurt my throat, which is still on fire.  Ended up vomiting because of it.  It’s just too painful.  I can tell that the patch has kicked in because otherwise I feel better.  My throat should be okay by tomorrow morning.  I did take a hydrocodone and that helped a little, but I’m going to need to take another one before bed.  Other than that not having issues anymore.  Antibiotic has definitely helped.  Although, I think I might be addicted to the patches, since I start feeling bad on the 3rd day they’re on and then after I put on a new one I feel better.  And I don’t usually have any pain associated with the fatigue.  Withdrawal symptoms anyone???  Ugh.

Good news

Doctor’s visit went well today.  Both my white and red blood cells have improved.  WBCs are even in the normal range.  Hemoglobin  is a touch up, so I’m definitely going to continue my iron supplement.  Of course, I did have a low grade fever, so getting back on amoxicillin, and now I’m staying on it.  The kids are constantly bringing some kind of bug my way.  I’ll just have to stay on antibiotics till I’m done healing.  Feeling better today too, since I strapped on a new patch yesterday before going to bed.  *sigh*

Fine, and then down

I did great this morning.  Starting to try and drink.  Feels REALLY weird.  It’s not painful, but my throat does feel funny when I do it.  Water tastes a little salty.  Cranberry juice mixed with 7Up is tasty and sweet.

I had great energy this morning.  Doing laundry, going shopping, and then in the early afternoon I just dropped.  Suddenly severely tired and didn’t want to do anything but sit in bed.  Need new patch?  More anemic?  Other?  Going to the doctor tomorrow for routine, so we’ll see whats going on.

Better?

Woke up this morning pretty tired, but that improved through the day.  My throat actually hurt less this morning and this is on the 3rd day of patch, so I’m hoping this means improvement.  Have been doing some mild talking throughout the day and that’s felt okay too.

So I woke up and had my water, Zofran, orange juice with iron supplement all via tube.  Then we had the Easter egg hunt in the house with the kids and then I promptly vomited up the things I “drank.” Felt much better after that and after taking the obligatory photos of the boys opening their eggs, I tried for the food.  That actually worked fine and stayed down.  I did go to church with Hektor, but it got me very tired.  So after coming home, I was down for 2-3 hours.  Slowly improved after that and kept my normal feeding schedule and held everything else down.  By the evening I felt good.  I had to put on a new patch in the morning after my shower because the old one started falling off.  Not unusual after 3 showers.  Hoping for a nice day tomorrow, first patch day.

Just tired

Woke up feeling tired and have pretty much stayed that way all day, so hanging out in bed (on top of the covers, showered and dressed – I even dried my hair).  My throat hurts a little bit more than yesterday, but not really all that much.  I’m not particularly sleepy, but I quickly get that way when I start doing something.  So doing very little.  I washed the kids’ bedding and got the eggs and baskets ready for their Easter egg hunt tomorrow, but that’s been about it for today.  I’m hoping to feel well enough tomorrow, so that I can attend Easter Mass with Hektor.

Feeling better

Felt better today thanks to new patch, I think.  Had to take care of the kids this morning by myself, since they didn’t have school, but John did go in to work.  It wasn’t too bad, just tiring.  They were not their sunshine happy selves, and that always makes it more interesting especially since I can’t really talk to them.

Symptoms wise, my throat hurt some, but not horribly.  It actually only hurts when I swallow or try to talk.  Whispering is okay.  Salivary overproduction wasn’t too bad today, but I did have my spit cup with me everywhere.  I got very sleepy in the middle of the day, so I took a nap.  Otherwise, I had good energy.  I did the laundry and grocery shopping, so it turned out to be a productive day.  I even went to Hektor’s baseball game and made it through that without getting too tired.

Not so good

This morning was fine.  Usual amount of saliva, minimal pain, not too tired.  Then around 3:30 pm, it hit me.  I started having lots of throat pain, so of course I vomited up lunch.  Tried to calm that down with hydrocodone.  That helped a little.  By 6 pm, I was bringing up lots of thick mucus.  Still had enough energy to get Duncan from daycare (John was at swim lessons with the other 2) and to even make dinner, but I crashed out after that.  Then it was in and out of sleep with cold sweats coming on and off.  Changed my patch, since it’s been 2 days.  We shall see how I feel tomorrow.